on a scale of 1 to 10...
I went to the acupuncturist's today and I had a funny realization. Even alternative doctors ask the question:
"On a scale of 1-10, what would you say your current level of pain is?"
I'm sorry, what was that?
Many things run through my mind when I'm asked this question. I find myself wanting to seem tougher than most. In other words, I want you to like me. So this might have me low-balling my actual pain.
But I also want to get the best care I possibly can, and I wonder, will acting tough prevent this from happening?
And then I start wondering how your 1-10 could possibly feel anything like my 1-10. I mean for all I know, you could be an ultra runner in your down time, pain might feel very different to you than to it does to me. Also, how does one truly quantify pain? It is at times elusive even to me, the patient.
MS is still new to me. There are mornings when I wake up and my body hurts. I feel ancient. My neck and shoulders ache. My balance is off. My knees are sore. My right side is tight. But this can't stop me from my morning routine. I still need to get my little guy off to school on time. I go downstairs, make sure he's up, and we start the day. I make his hot rice cereal. I pack his lunch. I help him get dressed and stay on track. At 8:43am I make sure we are downstairs and outside to catch the bus.
All of this needs to happen. It doesn't much matter if my pain is at a level 3 or a level 7, you know? Things still need to get done.
So, I do my best to check in with my body as I lay on the doctor's table. Where am I at? Yesterday my pain was low. But is this true, or have I just become used to my new level of everyday pain? How can I possibly remember what it felt like a year and a half ago? Did pain feel completely different back then, when it was brand spanking new? Probably. But that doesn't matter today, right?
And where am I at emotionally? Am I burnt out on feeling different? Do I want to minimize my pain so that I might think I'm more normal than I feel? Do I need extra attention today? Do I feel alone in this new reality? Do I just need a hug and some empathetic care and love? Finally, is it possible for me to get the kind of relief that I so desperately crave, and if so, is it remotely possible that YOU will be the one who can give it to me?
Anymore, it seems like most people I know are contending with some type of pain. For some, it is an auto-immune disease like mine. We have a diagnosis and on paper we look legit. For others, it is more fleeting. It pops up here and there, without any real consistency, so we feel like it might be in our minds. This is very hard. And for others, it is in our minds (or hearts). We do the best we can to convey what it feels like, but it's tricky to get the kind of relief we're after. We might spend years not knowing exactly how to even ask for the help we need, so we stay quiet until it's more than we (or our partners/family's) can bear.
To top all of this off, we then have to consider what kind of pain management we're okay signing on with. For me, a person in recovery, pain medication is a little scary. I have a tendency to fall in love with pain pills ~ so knowing this, I choose to keep my distance. So how do I manage my pain?
I have been using medical marijuana since I first got sick. I spoke at length with my primary care doc about this. Luckily, she has a lot of experience working with addiction. We talked about options. I first read a lot about CBD. As far as I can tell, this seems to be the healthiest option. Cannabis was never my 'drug of choice'. When I was a teenager, the only weed available to us back then caused me to feel super paranoid and hyper-self conscious. I didn't care much for it, so I never craved it. That helps.
When I went to a cannabis pharmacy to find out what I should buy, I (coincidentally) was paired up with a budtender who herself experienced MS. What a gift! She was only 26 yrs old, but had dealt with her MS for over 10 yrs. She explained everything to me. Why rubbing CBD oil on wouldn't cut it, as our type of pain is typically too persistent and global. We'd never be able to stay ahead of the pain, rather, we'd be chasing it all day.
Instead, she recommended a few different types of flower that I could grind up and use in a fancy vape pen. Wow. This felt really weird for someone like me ~ a mom in her late 40's who has been in recovery for over 8 yrs. But given the options, and all that I've read about the anti-inflammatory properties of cannabis, I figured it was worth a try. Turns out, it works. It manages my pain without messing with my head or throwing me back into addictive behavior.
I know this kind of alternative medication isn't for everyone. A lot of people feel a little sketchy using something we have demonized for so long as their miracle drug. That's completely understandable and okay with me. I don't want to win anyone over with my choice. It has been a little awkward explaining all of this to my young and Western trained neurologist. There is no proof, he says. And that's okay too. I am too old to feel intimidated into fear. I have seen alternative medicine work wonders for my son when the docs thought I was a little crazy (using acupuncture, cranial-sacral therapy, massage for his lymphatic system, and of course, an organic and healthy diet). He is still here. He is doing far better than they expected. He was only on a feeding tube for one year, rather than the rest of his life.
It's important for me to remember that this is MY body. I am the one who gets to decide what I put into it everyday. It can't matter to me what you think I should do, as you are not the one living in my world. I want to wake up clear headed and healthy. If my body hurts when I wake up, I can stretch and go slow. I can meditate and check in with myself. I can decide whether I need anything for pain just now (and that's okay) or I can decide to wait a little and see if it subsides after moving around a bit. I don't have to let fear rule today.
New big pharma medications for MS are popping up all the time (or at least being rebranded to be called MS medications). The newest one, Lamtrada*, costs $158,000 for the first year. It sounds like the average person might need 1-3 complete rounds of infusions for it to take. And as if that isn't daunting enough, one can only be approved for this medication after they've already tried two other MS meds that are on the market. With the other choices, patients give themselves shots or pills 4-7 times per week, and even then, these meds might stop 'working' after only a few years. It's important to remember that these medications don't necessarily stop pain, they might just help prevent a relapse. Might? This means more pills to contend with my pain? No thanks, not yet. I will come back to these meds only if my current regime stops working for me. And to be honest, getting daily phone calls from the big pharma reps urging me to try their brand felt a little like dealing with a drug pusher. It felt wrong.
So, I will continue to try nutrition, rest, cannabis, mindfulness, yoga, meditation, and slowing down. I will go to my acupuncturist for treatment, keep my weekly counseling appointment to keep honest and self-aware, and I will read as much as I can about MS. Cannabis has recently been approved as a seizure medication by the FDA for children, so progress and acceptance are on the horizon in western medicine. In fact, I was able to convince my neurologist to sign the paper work for me to renew my medical marijuana card. I was the first person he's ever done this for. I hope I am nowhere near his last patient making this request.
I guess my being perplexed by how a doctor can still use the 1-10 pain scale is not all that important in the scheme of things. We are all a little baffled by pain. It can be tied up with so many other things, old things that we aren't even conscious of. Maybe one day we will have developed a better means to communicate what it's like to be in our skin. Until then, I will continue to try my best to understand my own body/mind/spirit. I will learn more about how to pull apart my physical from my emotional 'pain'. Maybe one day I will be able to clearly state, 'My MS body pain is at a 4 today!' and feel this is accurate. I won't try to be tough or worry that I'm coming across as wimpy. I won't worry at all, I will simply be stating my truth and let it go at that.
*Lamtrada was previously known as Campath, and was used to treat Leukemia. When scientists realized that it had even better results for treating MS, it was pulled from the market for rebranding. When all is said and done, it went from costing the consumer $2,000/dose to $20,000/dose. This is a 900% increase. It is actions like this that keep me highly skeptical of big pharma and what my western doctors prescribe.
MS is still new to me. There are mornings when I wake up and my body hurts. I feel ancient. My neck and shoulders ache. My balance is off. My knees are sore. My right side is tight. But this can't stop me from my morning routine. I still need to get my little guy off to school on time. I go downstairs, make sure he's up, and we start the day. I make his hot rice cereal. I pack his lunch. I help him get dressed and stay on track. At 8:43am I make sure we are downstairs and outside to catch the bus.
All of this needs to happen. It doesn't much matter if my pain is at a level 3 or a level 7, you know? Things still need to get done.
So, I do my best to check in with my body as I lay on the doctor's table. Where am I at? Yesterday my pain was low. But is this true, or have I just become used to my new level of everyday pain? How can I possibly remember what it felt like a year and a half ago? Did pain feel completely different back then, when it was brand spanking new? Probably. But that doesn't matter today, right?
And where am I at emotionally? Am I burnt out on feeling different? Do I want to minimize my pain so that I might think I'm more normal than I feel? Do I need extra attention today? Do I feel alone in this new reality? Do I just need a hug and some empathetic care and love? Finally, is it possible for me to get the kind of relief that I so desperately crave, and if so, is it remotely possible that YOU will be the one who can give it to me?
Anymore, it seems like most people I know are contending with some type of pain. For some, it is an auto-immune disease like mine. We have a diagnosis and on paper we look legit. For others, it is more fleeting. It pops up here and there, without any real consistency, so we feel like it might be in our minds. This is very hard. And for others, it is in our minds (or hearts). We do the best we can to convey what it feels like, but it's tricky to get the kind of relief we're after. We might spend years not knowing exactly how to even ask for the help we need, so we stay quiet until it's more than we (or our partners/family's) can bear.
To top all of this off, we then have to consider what kind of pain management we're okay signing on with. For me, a person in recovery, pain medication is a little scary. I have a tendency to fall in love with pain pills ~ so knowing this, I choose to keep my distance. So how do I manage my pain?
I have been using medical marijuana since I first got sick. I spoke at length with my primary care doc about this. Luckily, she has a lot of experience working with addiction. We talked about options. I first read a lot about CBD. As far as I can tell, this seems to be the healthiest option. Cannabis was never my 'drug of choice'. When I was a teenager, the only weed available to us back then caused me to feel super paranoid and hyper-self conscious. I didn't care much for it, so I never craved it. That helps.
When I went to a cannabis pharmacy to find out what I should buy, I (coincidentally) was paired up with a budtender who herself experienced MS. What a gift! She was only 26 yrs old, but had dealt with her MS for over 10 yrs. She explained everything to me. Why rubbing CBD oil on wouldn't cut it, as our type of pain is typically too persistent and global. We'd never be able to stay ahead of the pain, rather, we'd be chasing it all day.
Instead, she recommended a few different types of flower that I could grind up and use in a fancy vape pen. Wow. This felt really weird for someone like me ~ a mom in her late 40's who has been in recovery for over 8 yrs. But given the options, and all that I've read about the anti-inflammatory properties of cannabis, I figured it was worth a try. Turns out, it works. It manages my pain without messing with my head or throwing me back into addictive behavior.
I know this kind of alternative medication isn't for everyone. A lot of people feel a little sketchy using something we have demonized for so long as their miracle drug. That's completely understandable and okay with me. I don't want to win anyone over with my choice. It has been a little awkward explaining all of this to my young and Western trained neurologist. There is no proof, he says. And that's okay too. I am too old to feel intimidated into fear. I have seen alternative medicine work wonders for my son when the docs thought I was a little crazy (using acupuncture, cranial-sacral therapy, massage for his lymphatic system, and of course, an organic and healthy diet). He is still here. He is doing far better than they expected. He was only on a feeding tube for one year, rather than the rest of his life.
It's important for me to remember that this is MY body. I am the one who gets to decide what I put into it everyday. It can't matter to me what you think I should do, as you are not the one living in my world. I want to wake up clear headed and healthy. If my body hurts when I wake up, I can stretch and go slow. I can meditate and check in with myself. I can decide whether I need anything for pain just now (and that's okay) or I can decide to wait a little and see if it subsides after moving around a bit. I don't have to let fear rule today.
New big pharma medications for MS are popping up all the time (or at least being rebranded to be called MS medications). The newest one, Lamtrada*, costs $158,000 for the first year. It sounds like the average person might need 1-3 complete rounds of infusions for it to take. And as if that isn't daunting enough, one can only be approved for this medication after they've already tried two other MS meds that are on the market. With the other choices, patients give themselves shots or pills 4-7 times per week, and even then, these meds might stop 'working' after only a few years. It's important to remember that these medications don't necessarily stop pain, they might just help prevent a relapse. Might? This means more pills to contend with my pain? No thanks, not yet. I will come back to these meds only if my current regime stops working for me. And to be honest, getting daily phone calls from the big pharma reps urging me to try their brand felt a little like dealing with a drug pusher. It felt wrong.
So, I will continue to try nutrition, rest, cannabis, mindfulness, yoga, meditation, and slowing down. I will go to my acupuncturist for treatment, keep my weekly counseling appointment to keep honest and self-aware, and I will read as much as I can about MS. Cannabis has recently been approved as a seizure medication by the FDA for children, so progress and acceptance are on the horizon in western medicine. In fact, I was able to convince my neurologist to sign the paper work for me to renew my medical marijuana card. I was the first person he's ever done this for. I hope I am nowhere near his last patient making this request.
I guess my being perplexed by how a doctor can still use the 1-10 pain scale is not all that important in the scheme of things. We are all a little baffled by pain. It can be tied up with so many other things, old things that we aren't even conscious of. Maybe one day we will have developed a better means to communicate what it's like to be in our skin. Until then, I will continue to try my best to understand my own body/mind/spirit. I will learn more about how to pull apart my physical from my emotional 'pain'. Maybe one day I will be able to clearly state, 'My MS body pain is at a 4 today!' and feel this is accurate. I won't try to be tough or worry that I'm coming across as wimpy. I won't worry at all, I will simply be stating my truth and let it go at that.
*Lamtrada was previously known as Campath, and was used to treat Leukemia. When scientists realized that it had even better results for treating MS, it was pulled from the market for rebranding. When all is said and done, it went from costing the consumer $2,000/dose to $20,000/dose. This is a 900% increase. It is actions like this that keep me highly skeptical of big pharma and what my western doctors prescribe.
